DIEP Flap Reconstruction 2016
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I wasn't able to look at myself for nine months. Oh well.
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Pink- I have had a double mastectomy. Llet me say that article is a bunch of scaremongering.
First, let me address your itchiness and pain. You had nerves cut when you had the SLN most likely. I did. The sensations you are feeling are your nerves talking to you. They aren't happy. They're a little pissed off in fact. You will continue to feel sensations for months most likely. They might be weird, they will come out of nowhere. They will eventually become fewer and far between, but they will be there. I had my BMX July 31st. The back of my arm where my lymph nodes were removed is numb. I had the itchiness and pain there after my surgery, and I have some feeling coming back. That was my reality. It might not be yours.
Next, your scars. You're looking at immediate DIEP, right? I didn't look at my scars for a couple weeks. I really didn't want my husband to see me, but he had to help and I preferred he saw it rather than me. So, he shielded me so I couldn't see until I was ready. Seeing my scars sucked, but I got used to it over time. What really helped is that I started having TE fills three weeks after surgery. I soon got a little shape and it became so much easier to adjust to it because I wasn't flat. If you have an immediate DIEP, you will have shape immediately and I think that will help you adjust. I'm not a total prude, but I'm not one for sharing pictures of breasts. I'll post a pic of the scar on one of my breasts though so you can see. I'm almost six months out and the scars are really fading. You'll also see how those TEs look like the worst implants ever!!
Your surgeon will not want you in a bra for awhile. I got some post-surgical bras that close in the front because it is easier at first. I'm back in regular bras now, though they don't want you in underwire. Your breasts will be perky and you won't need underwire anyway. I wear normal clothes. For the first several weeks after surgery I had to wear button down shirts because you won't be able to put your arms above your head. No biggie, you will get there after 3-4 weeks.
The bad news- your body is going to go through hell during this surgery. This is just the truth. It is MAJOR surgery, so you can expect your body to be mad about it. Your nerves will be talking to you for months- shots of pain, weird tingling, itchiness- they are waking up and getting back to work. You are going to have numbness in places you didn't expect. It will last forever. It sucks, but you get used to it. On the side where I had two lymph nodes removed, my underarm is numb, as well as the back of my upper arm. It itches and when I scratch it, it gives me no relief! It's so weird. I can't sugar coat these things because your life will change forever, but it isn't debilitating. It's just different.
I've been pragmatic throughout all of this, and I know not everyone is like this. I certainly had many cries- when I lost my hair, several days after I lost my hair, throughout chemo, after my BMX, when I've thought I had a recurrence as well. Just try to wrap your head around it all as much as you can.
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The flat is actually the side of my body.
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Pink: I understand how you feel. I didn't want to see my body. Oddly, the hotel we stayed in after my surgery had a very high shelf and mirror in the bathroom. I couldn't see anything. I needed my sister to help me bathe and dress the incision cites and them my husband (which I hated). I didn't want him to see me. But I fit in the exact same bra I had before the surgery. I think my left breast is slightly larger or it could still be a little swelling after rads.
But I had to look to dress my incisions. It wasn't easy. I am not going to sugar coat it. I guess it gets a little easier every day.
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jlstacey, your scars look AMAZING! Do you generally heal so well?
(And down the road, do we get to wear underwire bras again, or are they forever off-limits?)
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3 days until surgery. Today is my last day at work for awhile. Just received a great hug that almost made me cry. I didn't though. Cause there is no crying in the Silicon Valley. Just impossible high rents and hoodies.
I wonder if I will want to look at myself after surgery. I'm sure I will. I'm the girl that watched the entire surgery on YouTube. I'm a bit fascinated by the science. However, from a vanity point of view... I am single, and wonder how long until I will feel comfortable dating or being intimate. Guess time will tell.
I've started a Vlog... and plan to finish the first pre surgery video tonight. I'll keep you ladies posted.
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Keeping you in my thoughts and prayers, myajames. You're going to ROCK THIS!
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Thanks CarolinaAmy!
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Golden bride thinking of you wishing u good healing. Myajames thoughts are with u for Monday sounds like you are prepared and you will do great xo
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Hello Myajames, sending prayers and happy thoughts, 🙏🏼
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Jlstacey -
First, thanks for explaining about the nerves. I didn't think of that at all. I do remember reading something about that now that you mentioned that, so that makes sense. Doesn't make the itching less irritable (especially since the area is so sensitive), but does help me understand. Again, thanks! Also, I can't remember who else complemented your healing, but they were/are correct - That looks REALLY wonderful for 6 months!!! I can't see my SLNB scars well yet - the steri-strips are still covering. Guess we'll see soon how well I heal (I feel like I'm a slow healer based on the healing of bruises, but I haven't experienced many cuts (or any stitches except once). I don't really notice the one stitches scar I have, but I do feel it all the time.
I am wondering, however, am I understanding correctly that six months out you still have TEs? Did you get them filled slower or have a complication? (Sorry if I'm making you repeat info). My PS said 3 months in TEs if I didn't have immediate DIEP. It seems most folks I talk with that have TEs do seem to have them for 6 months or longer, which why I wanted immediate DIEP reconstruction.
As for my surgery ---- Now that they've found cancer in the left lymph nodes, my BS is recommending an Axillary Lymph Node Dissection and Radiation. After doing much research, I've come to the conclusion that I'm unwilling to have both the ALNB and radiation due to the higher risk of lymphedema by doing both - especially since it's my left arm lymph nodes and those are the ones that clear most of the body (right lymph nodes do very little work in comparison).
Anyway, my gram had a really rough time with lymphedema (also left arm) and it really cut into her quality of life. And, as both of my arms are technically at risk already, I'm unwilling to really risk lymphedema full out (not when doing both from all I've found is no guarantee against local recurrence). So, I plan to speak to my BS and my radiologist and figure out which of the two they'd rather me have. I'm willing to do one - just not both. I may consider both if they are willing to perform Axillary Reverse Mapping, but I need to get a better understanding of that to really figure that out. Anyway, after I know that recommendation I'll know if I'm still a candidate for the immediate DIEP or not.
My BS also wants me to meet with a MO to determine if she wants me to do Chemo before or after surgery. Based on my markers (they are actually better than my markers of my other tumors), he believe she'll recommend after surgery. So, that's still in the works to figure out - having more test that the MO apparently needs then meeting with her. So, I'm still in limbo for now, but I should be out of limbo by week after this coming one (assuming the weather doesn't push things more). Lots of snow already.
As for the bras and clothing - thanks to you and CarolinaAmy for the info. That is helpful and a relief!!!!! Mostly I've stuck to sites like this one for info, but I'm now in the process trying to get things in preps for surgery and came across that one (again, I wasn't really expecting the article to be what it ended up being).
Btw, do you know why underwire bras are banned? I'm assuming it may rub the mastectomy incision and that's why an underwire is not suggested, but was just wondering if you knew the reasoning. I will admit that for the first couple of days after my SLNB, I was more comfortable braless; however, since then I've worn my underwire bras (except for sports bras underwire bras are all I own until one wireless one I ordered was delivered yesterday). Today I tried my sports bra - have to say, I've been more more comfortable in my underwire bra. I did wash the new wireless bra I ordered in preps for surgery and plan to try it tomorrow. It may be better. I ordered it a size larger circumference wise and the cup is one of these that stretches to you cup size, but right now between a sports bra (that zips in front) and the underwire bra, I've been more comfortable in the latter.
Goldenbride - you are in my thoughts. Hope all is going well for you!!!! Myajames - Hoping Monday goes smoothly for you. You are also in my thoughts and prayers as well! So, wish we all weren't in this situation, but very glad to have found this site and all of you ladies!!
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Goldenbride- I hope your surgery went well and you are well medicated! No pain tonight is what I'm hoping for you!
Myajames- good luck Monday! I know you must be nervous. And now, I think you are a rock star for watching the surgery on youtube! All 8-10 hours?
CarolinaAmy- I guess I do heal well. That photo uploaded kind of faded. The scar is still pink, but it is flat and is very unobtrusive. The only surgeries I have had previously are the tonsils as a kid, laparascopy, port surgery and this. I hope everyone else's scars fade as well. Of course, I'll be starting over on February 18th. My PS will be using those same incision lines for my DIEP.
Pink- there are a few reasons for the timing on my surgery. My PS was booked out until March when I first decided to use him. They did offer me a date in January at first (this was in October), but I wanted to be able to do Valentine's parties and some other things with my kids. I did probably 8-10 weeks of fills. They like for you to have them "settle" for two months before surgery.
I think the underwire thing isn't forever, but I think it has to do with healing. I used a post-mastectomy camisole after my BMX and will use them after my DIEP. They have pockets for drains and velcro up the front. They are totally easy. My BS gave me a mastectomy bra. I bought a couple as well. I used them for a while, then went back to my old bras, which didn't have underwire. I know a lot of women just use sports bras, but that was never my thing except when I exercise!
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Pink, if your plastic surgeon does his job right, you will be able to fit into normal bras. I pulled my pre-surgery ones out a few days ago and they fit! And boy do them make me look good.
I asked my surgeon about underwires, and he said that is fine now (6 weeks out). So it isn't a forever thing. I suspect they are off the list at first just to ensure that there is no pressure to cause healing troubles.
After my TEs, the doc wanted me wearing sports bras, which are a pain since they don't work with a lot of clothing, but they were handy because they are more flexible on size. I am looking forward to bra shopping at some point. (I didn't like the fit of my bras pre-op, so I wanted to change anyway!)
Some ladies on the 2014 forum suggested the Genie Zip Bra. They aren't too expensive and they zip up the front, so that would be handy. They are shaped better such that they will work with more clothing. I wish I had gone with them instead of the sports bras I used, but water under the bridge.
https://www.geniebra.com/zip-bra-front-close-by-ge...
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Good luck to everyone, esp myajames with upcoming surgery. I was told never to wear underwire. As someone who is almost two years post DIEP, there is some feeling back in my breasts but not the same. I am very grateful though for having gone through it and to be here! I never wear underwires. I gained weight since two years ago so mine are bigger which is not a surprise given it is basically abdominal tissue lol. I never go without a bra except to sleep, for me it is more comfortable.
Hugs to you all and know I pray for you and am asking God to help you through it all.
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I don't post here as often any more, but have been catching up. My bilateral diep with immediate recon was in August. Rosie I had chosen the double as a prophylactic for same reasons as Grateful, but it turns out there was stuff starting in the good side too, so glad I did. A cosmetic bonus is that surgeons find it easier to match sides. Also my results are great -- way better than meh -- near Hollywood I have been told -- that's without the nipple or tattoo yet -- but referring to general shape.
Pink -- I can hear your angst on so many levels. Have you been able to find a surgeon who will do immediate recon? I was afraid about looking in the mirror too, so that's why I went with immediate, as well as the fact that where I live it can take one to two years to get on the recon list if you wait. While it took a bit longer to set up and complete, I found the single surgery was great. It was so comforting to wake up with 'fleshy mounds' and a complete bonus that when I actually gathered the nerve to look a few days later I was thrilled. I too was concerned re risks of lymphedema, and had 3 nodes removed -- first one had a few micromets but next two clear --, but have found an amazing physio trained in lymphedema management as a just in case, and learning how to prevent/minimize risk. I don't wear underwire bras yet, but do wear normal clothes which look very flattering. I don't have a lot of feeling back yet, but heard nerves do regrow albeit very slowly, and with a great overall shape and natural jiggle I am happy. PS I have been told itchy = healing.
I started with chemo 'to shrink a large tumour in a smaller breast' for a safer outcome. Generally I have heard it improves margins. By doing a nipple losing mastectomy, I had been hoping to avoid radiation, but when they saw the extent of my infiltrative lobular still there at surgery [much of it too thin and lacy to show on a scan] it ended up being recommended, so am doing that now...
Goldenbride - yay !! you are on the other side as a flapper now. Hope healing goes smoothly and way better than meh!
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add me for stage 2 DIEP on apr
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i got a bit lost with the forum, i am not getting emails anymore, because we change the year? So: what's a perforator?
It's a month since my Diep and still have healing problems in armpit and down the flap( where an underwire will go). It looks bad, only with a mirror i can see it. I have a visiting nurse but they scare me more than my ps, he seems so calm! He said i had a "dehiscence", don't even know how to pronounce this word. I dealt with so many radiation 's wounds and infections for 3 yrs that I have to remind myself that this is belly fat and it will resolve in 2/3 weeks as dr said. The flap separated for 2 inches apart and I hope it will not get infected. I'm changing dressings and use saline to clean twice a day.
My abdominal incision, 46 cm, healed beautifully! But still using a compression band.
New boob I think is a C; the Left one DD! How the heck I will dress or what bra I will use to go to work! Just until April when I will have reduction.
The nurse told me not to work yet, she is scared I will fall on icy sides walks ( big storm here). I planned go Monday will see. Sorry too many things in my mind; read 7 pages of posts, very anxious today, so many new people I don't mean to scare them! I finish baby aspirin today!!! Good luck to the ones going thru stage 1 .
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Hi Sablanut,
So sorry about your wound trouble. Dehiscence (pronounced "dee-hiss-ence") is a complication that happens with any surgery, especially in people who have a high BMI.
The cure is what you are doing--wet to dry dressings with saline to encourage the wound to heal from the inside out.
It is a pain to deal with, but it will heal over time. Do be careful not to fall. A fall could make he wound open even further.
Be sure to get plenty of protein in your diet so you can heal. Walk around inside to keep your heart happy.
A perforator is the blood vessel that feeds the fat that they took to make your breast. It perforated (poked through) the muscle in your belly, getting larger in diameter as it went down.
In a true DIEP, the PS finds one good perforator. He carefully dissects down till it is large enough to use to connect with the blood supply in your chest.
Many PSs do a modified DIEP where they look for more than one perforator. They take a small chunk of muscle to keep the additional vessels as the go down to find the larger supplier.
The benefit of catching additional perforators is that it provides a better blood supply to the flap, decreasing fat necrosis (cell death).
My doctor prefers the multiple perforator method, and I have been happy with the results.
Does that answer your questions?
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I tried two different sizes of genie bras to use after my surgery. I found them extremely difficult to do up before my surgery so I sure as heck won't be able to do them up post surgery. Returned.
I just bought two post surgical mastectomy bras yesterday. Supposed to come out of surgery a C so we decided a D would work. I have my abdominal CT scan this wednesday. I don't have to drink any disgusting hospital concoction before, do i?
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hi tanya - when I had my abdominal CT there was no yukky potion to drink -- but they do inject you in the arm with contrast dye to better see your artery roadmap in the abdominal area
.. as a heads up to anyone .... although this likely will NOT happen to you.... it was my fourth CT in a year since this whole roller coaster of testing etc started, and my body reacted to the dye 20 hours later [it had never bothered before, but apparently although uncommon, sometimes that happens when the immune system finally wakes up and says 'hey what is that invader?'] and my arm got a very red itchy rash, so I am now apparently allergic. So if a rash develops, let your dr know asap.
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hello tanyarocks 30....I had my abdominal CT Thursday. It was one of the easier tests so far. They tell you not to eat or drink anything 4 hrs before. They insert the dye thru arm and 15 min later your done, only thing I felt was a very warm sensation when the die was working its way down. This week pre-op with PS and next week pre-op with hospital and anesthesia people.Our surgeries are about one week apart. It will be nice to talk about it.Keep you posted....
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Hi! I am having a double mastectomy diep flap surgery on Feb 1, '16. I don't know how to use discussion boards so please excuse my ignorance and help me. I have the option to:
1. Nipple saving on both breasts and keep my large saggy breasts
Or
2. Breast lift and nipple reconstruction with, I guess, tattoos. I have no idea since I am currently overwhelmed.
How do I ask women to provide me with their experiences and the pros and cons and how do I follow?
Thanks for your help and guidance.
LauraAnne
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you can post your question to one of the nipple threads. Here are a couple.
https://community.breastcancer.org/forum/44/topics...
https://community.breastcancer.org/forum/44/topics...
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thanks phoebe and grammie. I figured it was the dye because drinking something for blood vessels didnt make any sense lol.
I am
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Hi BigSister,
I've read many of your posts and find them very informative and do help calm me. Not sure if I am doing this reply in the right spot as this is my first time on this page.
This is my second time around with breast cancer. I was diagnosed at 35 years of age the first time. I was going thru a horrible divorce and had a 2 year old daughter that I was fighting for primary custody at the same time I was going thru chemo. It was a horrible time in my life and I remember it like it was yesterday. Well fast forward 17 years of some very rocky roads and tough journeys along the way and here I am once again diagnosed with breast cancer. I was floored. How could this happen to me again and haven't I gone thru enough in my life already? But I know there are others who are fighting a much bigger battle than I. But also with this diagnosis, I find myself questioning my mortality. Right now I'm at a point where I'm more afraid of living than dying. Even though my prognosis is very positive as the doctor states, I'm not sure I have the strength to put myself thru a bilateral masectomy with diep flap. I cry every single day and pray for God to take me away. I know that sounds horrible to say, but like my mother always tells me, if you didn't have bad luck, you wouldn't have luck at all. I am currently single and live alone. I relocated to Arizona 2.5 years ago to start my life over after my last divorce. Life has been very difficult for the most part, too much to write down here, with all my trials and tribulations. But I decided to join this forum, to try and find strength from somewhere or someone to help me thru this terrifying journey. I can't eat, sleep or really function since I found out what is ahead for me. I admire all the women who have gone thru the journey or are just coming out on the other side like yourself.
I don't know if I'll make it to surgery day. The anxiety and panic attacks I suffer each day are crippling. I'm on anxiety medication, but it does not help much at all. I've fallen into a bad depression and I don't see a light at the end of the tunnel. And to make matters worse, I don't have much help or support here as I just moved here not too long ago. I have a brother who lives down the street from me and he has been my rock. But he can only take a week off of work to help me once I get home from the hospital and after that I will be on my own during the day. And from what I'm reading, you need help at least two weeks after surgery. So that's just more stress for me to deal with.
I am absolutely terrified of doctors and needles. No one can understand my fear. It's parallyzing to me . I wish I had the courage and strength of some of the women on here. I'm normally a very bubbly, fun and outgoing person, but this has definitely taken the wind out of my sail and I thought now that a couple weeks have gone by, I'd find the strength to go thru with this and I haven't. I have an appointment with the Breast Surgeon and Plastic Surgeon this Thursday, Jan. 28th. And my anxiety is getting worse as each day comes closer to the reality that this is what I have to face.
I'm hoping you ladies can give me some words of strength, so I can go thru with this and not making any foolish choices. I want to scream at the top of my lungs, but I no one will hear me. Any words of encouragement would be greatly appreciated from all you strong ladies. Thank you kindly.
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I am a couple months out now from my diep. I am not a healthy patient, so it took a while for the swelling to come down, but if I was looking to be exactly the same size as I was before, I would be pretty close. The way my scars are, I can wear any bra including underwire, but not for a few more weeks. I opted for a second surgery to reduce the size of my breasts which I will do sometime in the future.
My poor husband has had to change very gross dressing full of infection as I have had a very bad recovery... It did take a bit for him to adjust and after the swelling came down a bit, I invited him to feel the new me, which I a, pleased to say feels very much like the old me.
I would not go crazy on bras. I got a couple of soft multi-size (as in they they stretch to cover a-d) and all you have to order is the band, which I would suggest going up for the swelling. I have been told not to wear bras as my doctor did not want pressure on the flap so I would ask your doctor.
You won't look the same, but you will be disease free. I am okay with that pay off. It will take time, but I am already wearing normal clothes etc. Take heart.
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myajames and goldenbride thinking of you both. Let us know how it goes when you can!
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Erskinegirl, you are having a diep flap, right? If you are having a BMX with DIEP, I can imagine that you will have large droopy breasts. Your PS will want to give you a good cosmetic appearance and will reconstruct with that in mind.
As for nipple sparing or not, I had a nipple-sparing BMX and am very happy with it. Many didn't keep their nipples and have not had them reconstructed or tattooed and are happy. Others have had them reconstructed or tattooed and are happy, so it really is personal preference. The one thing I know is that many people are still concerned with any tissue left when they keep their nipples, and that can drive that decision.
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WingsFly, I can see that you are really depressed. This whole thing sucks, and it really sucks if you feel alone! Are you on anti-depressants, seeing a therapist and using a psychiatrist (not a PCP)? Please do all of these things. I do, although I'm not seeing my therapist at the moment. I certainly was while going through treatment though. I have a history of depression, so I've had the same psychiatrist and therapist for years. They can help you to feel more balanced and get the momentum going on living again.
Do you have a Gilda's Club near you? They have support groups and activities. I went through chemo from 1/2015 - 6/2015, then had a BMX on 7/31/2015. Once I was up and moving again in August, I started feeling really isolated and got more depressed. I have two kids, and felt a little like friends were excluding me. I started going to some Gilda's Club activities and it helped. I know that if I don't get out with people, it can make things worse. So, know your triggers, and push yourself to get out, even if you don't feel like it while you are sitting on that couch. Since you don't have that support you need, you can created a support network with people there.
Perhaps you should do delayed reconstruction, or do direct to implant? If you don't think you will have the support you need, perhaps you can put that together if you do delayed recon? I have a husband, and two kids, but no family nearby. My closest family is my mom, who is 5 hours away. She can't physically be the help we need- she came to help last summer and it was a bit of a fiasco. So, I've had some moments where I have wondered if I should do implants even though I don't want that.
Have you contacted the American Cancer Society? They have an 800 number and are available 24 hours a day, even if you just want to talk. I called to ask them questions when I was first dx, and they told me this. It doesn't have to be about diagnoses, it can just be you needing to talk to someone because you are depressed. But, more importantly, they could very well be able to help you find resources to help with care after surgery. Your hospital should have a social worker to help with these things as well. Call your breast surgeon's office and ask. When I first met my team, the social worker was one of the people I met. It's part of their jobs to help with that. They asked my husband and I what our greatest worry was about my upcoming treatment.
Also- there are forums on depression etc on here. There is even a night owls thread!
https://community.breastcancer.org/forum/102
Hang in there....you have a bunch of BC sisters here to help you!
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Hi jlstacey,
Thank you so much for all the information you provided me. I too have a history of depression. Six years ago, I fell into such a deep depression that I ended up losing 50 pounds and was very suicidal. My ob/gyn at the time, God Bless her heart, gave me some resources to get help. But I fought any help for a long time, til I hit rock bottom. It's a horrible place to be, cause it's so hard to get yourself out of it once you slip too far into the depression. I cried 80% of each and every day. I couldn't eat, barely functioned and I still to this day don't know how I crawled out of that dark hole. My life has been very complex and a constant struggle of one kind or another. Seems I never am in non-fight mode. I have a very stressful job and I feel that is one of the biggest reasons I got this breast cancer again. I'm on medical leave right now, so at least I don't have that to deal with that right now. But I know after surgery and my recovery, I have to go back and start that stress all over again. And I can't switch jobs right now due to insurance reasons. So til I get through this whole process, I am stuck there.
I just started to get back on track financially, living on my own and making it paycheck to paycheck. I was so proud of myself after all the years of struggling with health issues and other things. At least I felt now I could afford to pay my mortgage and bills and as long as I stay healthy, I'll be ok. Well........... of course, went in for a mammogram December 10th, and on December 23rd a get a message on my phone that they want to talk to me about my results. By the time I listened to the message, it was too late to call them back and they were gone for 4 days for the holiday weekend. I was so mad that they left me that message and made me worry all Christmas holiday. I literally locked myself in the house and didn't spend the holidays with anyone, cause I knew it was bad. I have a sixth sense, and God sends me a message when something is wrong. I know that sounds crazy, but that's how it's been my whole life. So once Monday the 28th came, I called right away and of course I needed to go for testing. When I finally got the results, it was January 5th. Almost a month after my mammogram! I was devastated. How could this have happened to me again? Haven't I gone through enough in my life? I feel angry, scared and cheated. I'm a good person and always am there for others and yet I seem to never have things go good for me for long in life. My happy times are short-lived as I know there is always something bad around the corner. So now, I am set back financially because of all of this and I feel defeated. I want to give up so badly and just say, "Just please take me already, cause I don't have any fight left in me anymore!" I know I sound like I'm just having a pity party for myself, but trust me when I tell you, so many things go wrong in my life! And I sit here and think.... why am I putting myself thru all this pain and suffering when I don't really see a light at the end of this tunnel. There's nothing exciting for me on the other side after all of this, just more struggles. So I get frustrated and mad, sad and defeated, and don't know where to start to get myself through this. I'm sure I'm not the only one that feels like this. I know deep in my heart, if I knew that my family would forgive me, I would have been gone off of this earth on January 5th. But I don't want my family to suffer pain and loss. So I am trying to find the strength and courage to go thru with this for them, and not for me. It's sad, but true.
But thank you again so much for reaching out to me. You are a very brave woman and I envy you for that. I wish I could find that bravery inside of me like I had at age 35, with my first diagnosis. But time and life changes people and I'm not the same person I was 17 years ago.
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